How personalisation programs can exacerbate socio-economic inequities: findings from budget utilisation in the Australian National Disability Insurance Scheme.

BACKGROUND: Researchers and policymakers are increasingly concerned that personalisation schemes in social and health care might be worsening social and health inequities. This has been found internationally, where better outcomes from such schemes have been found amongst those who have higher education and more household income. METHOD: This study looks at one of the world's largest personalisation schemes, the Australian National Disability Insurance Scheme. Using publicly available data we examine the allocation and utilisation of NDIS funds according to social gradient. RESULTS: We find that the rate at which people with disability 'spend' or effectively use their disability care funds follows a social gradient. That is, those in areas of higher socioeconomic disadvantage are not spending as much of their allocated budgets on care services across the year compared to people in areas of higher socioeconomic advantage. This represents a clear issue of equity in the use of public money to people with disability in Australia. CONCLUSION: We argue that this points to the need to provide targeted supports for the use of disability care funds in areas of higher socioeconomic disadvantage. Without effective supports for fund use, the NDIS and other personalisation schemes may be positioned to worsen existing social inequalities.

'Faceless monster, secret society': Women's experiences navigating the administrative burden of Australia's National Disability Insurance Scheme.

Previous research has indicated that administrative burdens are particularly high in personalised funding schemes such as the Australian National Disability Insurance Scheme (NDIS), because these schemes are predicated on very high levels of self-advocacy. Administrative burdens tend to be inequitably distributed, thereby entrenching existing social inequalities. This is the first study to look at the lived experiences of administrative burden within the NDIS explicitly-and particularly those of women, who are underrepresented within the scheme. The research involved qualitative interviews with 30 women with disability who were either NDIS participants or had considered applying for the NDIS. We argue that like other marginalised groups, women with disability are experiencing significant administrative burdens within the NDIS, which are barriers to obtaining sufficient disability support. Based on this finding, we recommend the NDIS implement a gender strategy, as well as address burdensome administrative processes in general.

Balancing stability and change: Lessons on policy responsiveness and turbulence in the disability care sector.

Care systems worldwide regularly undergo reforms and adjustments in the hope of system improvements. In many ways this can align with calls for governments to be more 'adaptive' and 'agile' to changing care demands. However, such continued adaptations can create turbulence for the care sectors in question. In this article, we examine the large-scale reform of the Australia National Disability Insurance Scheme and the impact of a series of adaptations on the disability care sector in Australia. We find that the disability sector in Australia is experiencing turbulence and a lack of clarity about the rules regarding the programme, resulting in increased administrative burden and financial pressures. Such turbulence has flow-on effects on the level of care that is able to be accessed by people with disability in Australia.

Women's experiences of accessing individualized disability supports: gender inequality and Australia's National Disability Insurance Scheme.

BACKGROUND: Care services in industrialized nations are increasingly moving towards individualized funding models, which aim to increase individuals' flexibility, choice and control over their services and supports. Recent research suggests that such schemes have the potential to exacerbate inequalities, however none has explored gendered dimensions of inequality. The Australian National Disability Insurance Scheme (NDIS) is a major individualized funding reform, and has a female participation rate of only 37%, despite women and girls making up half of the disability population. METHODS: The objective of the study is to explore possible gendered barriers to applying for and receiving adequate support through the NDIS, and to suggest directions for future research. We report on semi-structured interviews with 30 women with disability and explore their experiences with the NDIS and their perspectives on challenges associated with being a woman seeking disability support in Australia. We analyse the results using thematic analysis. RESULTS: Most women in our sample reported differences between the experiences of men and women seeking disability support in Australia. Commonly reported gendered barriers to women being able to access the right supports for their disability involve a) confidence, negotiation and self-advocacy, b) gendered discrimination in diagnosis and the medical system, which has implications for disability support access, and c) support for and recognition of caring roles. CONCLUSIONS: These results suggest that women are not receiving equitable treatment with regard to the NDIS, and that further research and policy reform are needed to ensure that women with disability are not further disadvantaged as a result of the move toward individualized funding models.

Personalisation schemes in social care and inequality: review of the evidence and early theorising.

BACKGROUND: Personalisation is a growing international policy paradigm that aims to create both improved outcomes for individuals, and reduce fiscal pressures on government, by giving greater choice and control to citizens accessing social services. In personalisation schemes, individuals purchase services from a 'service market' using individual budgets or vouchers given to them by governments. Personalisation schemes have grown in areas such as disability and aged care across Europe, the UK and Australia. There is a wealth of evidence in public health and health care that demonstrates that practically all forms of social services, programs and interventions produce unequal benefit depending on socio-economic position. Research has found that skills required to successfully negotiate service systems leads to disproportionate benefit to the 'middle class. With an unprecedented emphasis on individual skills, personalisation has even greater potential to widen and entrench social inequalities. Despite the increase in numbers of people now accessing services through such schemes, there has been no examination of how different social groups benefit from these schemes, how this widens and entrenches social inequities, and - in turn - what can be done to mitigate this. METHODS: This article presents a meta-review of the evidence on personalisation and inequality. A qualitative meta-analysis was undertaking of existing research into personalisation schemes in social services to identify whether and how such schemes are impacting different socio-economic groups. RESULTS: No research was identified which seeks to understand the impact of personalisation schemes on inequality. However, a number of 'proxies' for social class were identified, such as education, income, and employment, which had a bearing on outcome. We provide a theoretical framework for understanding why this is occurring, using concepts drawn from Bourdieu. CONCLUSION: Personalisation schemes are likely to be entrenching, and potentially expanding, social inequalities. More attention needs to be given to this aspect of personal budgets by policymakers and researchers.

Personalisation schemes in social care: are they growing social and health inequalities?

BACKGROUND: The connection between choice, control and health is well established in the literature on the social determinants of health, which includes choice and control of vital health and social services. However, even in the context of universal health and social care schemes, the ability to exercise choice and control can be distributed unequally. This paper uses the case of the Australian National Disability Insurance Scheme (NDIS) to examine these issues. The NDIS is a major policy reform based on an international trend towards personalisation in social care. It aims to increase choice and control over services and supports for people who have or acquire a permanent disability, thereby boosting citizen empowerment and improving health and social outcomes. METHODS: The research is a structured review of empirical evidence on the administration and outcomes of the NDIS to identify how social factors constrain or enable the ability of individuals to exercise choice within personalised care schemes. RESULTS: We show how social determinants of health at the individual level can collide with the complexity of policy delivery systems to entrench health inequalities. CONCLUSION: Many social policy reforms internationally focus on improving empowerment through enabling choice and control. However, if administrative systems do not take account of existing structural inequities, then such schemes are likely to entrench or grow social inequality. Our research indicates that more attention must be given to the design of policy delivery systems for personalisation schemes to ensure health equity.

Making markets work for disability services: The question of price setting.

Personalisation schemes and associated markets for social care have been a growing trend in industrialised countries over recent decades. While there is no single approach to marketisation of social care and personalisation, often funds are devolved to clients of care services to be used to purchase services directly from market. Such arrangements are vulnerable to market failures and 'thin' markets, causing the need for stewardship of the social care markets. We present findings from a 2018 survey of 626 care service providers in the Australian National Disability Insurance Scheme market on their experience of market conditions. Over 46% of respondents listed 'addressing pricing' as their top action for addressing market problems. Qualitative findings show that central price setting is detached from service delivery realities, affecting service quality and capability building potential. We argue that devolution of price setting to, or at least flexibility and discretion at, the local level is likely to be a key to solving pricing dilemmas in personalisation schemes.

Adapting to a marketised system: Network analysis of a personalisation scheme in early implementation.

As governments worldwide turn to personalised budgets and market-based solutions for the distribution of care services, the care sector is challenged to adapt to new ways of working. The Australian National Disability Insurance Scheme (NDIS) is an example of a personalised funding scheme that began full implementation in July 2016. It is presented as providing greater choice and control for people with lifelong disability in Australia. It is argued that the changes to the disability care sector that result from the NDIS will have profound impacts for the care sector and also the quality of care and well-being of individuals with a disability. Once established, the NDIS will join similar schemes in the UK and Europe as one of the most extensive public service markets in the world in terms of numbers of clients, geographical spread, and potential for service innovation. This paper reports on a network analysis of service provider adaptation in two locations-providing early insight into the implementation challenges facing the NDIS and the reconstruction of the disability service market. It demonstrates that organisations are facing challenges in adapting to the new market context and seek advice about adaptation from a stratified set of sources.

Using systems science to understand the determinants of inequities in healthy eating.

INTRODUCTION: Systems thinking has emerged in recent years as a promising approach to understanding and acting on the prevention and amelioration of non-communicable disease. However, the evidence on inequities in non-communicable diseases and their risks factors, particularly diet, has not been examined from a systems perspective. We report on an approach to developing a system oriented policy actor perspective on the multiple causes of inequities in healthy eating. METHODS: Collaborative conceptual modelling workshops were held in 2015 with an expert group of representatives from government, non-government health organisations and academia in Australia. The expert group built a systems model using a system dynamics theoretical perspective. The model developed from individual mind maps to pair blended maps, before being finalised as a causal loop diagram. RESULTS: The work of the expert stakeholders generated a comprehensive causal loop diagram of the determinants of inequity in healthy eating (the HE2 Diagram). This complex dynamic system has seven sub-systems: (1) food supply and environment; (2) transport; (3) housing and the built environment; (4) employment; (5) social protection; (6) health literacy; and (7) food preferences. DISCUSSION: The HE2 causal loop diagram illustrates the complexity of determinants of inequities in healthy eating. This approach, both the process of construction and the final visualisation, can provide the basis for planning the prevention and amelioration of inequities in healthy eating that engages with multiple levels of causes and existing policies and programs.

Redressing or entrenching social and health inequities through policy implementation? Examining personalised budgets through the Australian National Disability Insurance Scheme.

BACKGROUND: Increasing attention is being given to political agenda setting for the social determinants of health. While designing policies that can improve the social determinants of health is critical, so too is ensuring these policies are appropriately administered and implemented. Many policies have the potential to entrench or even expand inequities during implementation. At present little attention has been given to this in the social determinants of health literature. There is an international trend in the personalisation of funding for care services, from the National Health Service in the England to the Brukerstyrt Personlig Assistanse in Norway. Part of this trend is the Australian National Disability Insurance Scheme (NDIS). The NDIS has the potential to secure gains in health for hundreds of thousands of Australians living with a disability. However, policies are only as good as their implementation. METHODS: As part of a longitudinal study on the implementation of the Australian NDIS, we conducted a systematic document search of policy documents pertaining to the Scheme on the websites of government departments with auspice over the design and implementation of the scheme with the aim of examining issues of equity. RESULTS AND DISCUSSION: Scheme architects have argued that the NDIS has the potential to replace a piecemeal and fragmented set of state-determined services with an empowering model of user choice and control. However, without careful attention to both existing inequities and, diversity and difference across populations (e.g. different disability types and different localities), market based approaches such as the NDIS have the serious potential to entrench or even widen inequities. CONCLUSIONS: The research concluded that 'personalisation' approaches can widen inequities and inequalities unless careful consideration is given at both policy design and implementation stages.

Can the sociology of social problems help us to understand and manage 'lifestyle drift'?

Lifestyle drift is increasingly seen as a barrier to broad action on the social determinants of health. The term is currently used in the population health literature to describe how broad policy initiatives for tackling inequalities in health that start off with social determinants (upstream) approach drift downstream to largely individual lifestyle factors, as well as the general trend of investing a the individual level. Lifestyle drift occurs despite the on-going efforts of public health advocates, such as anti-obesity campaigners, to draw attention to the social factors which shape health behavior and outcomes. In this article, we explore whether the sociology of social problems can help understand lifestyle drift in the context of obesity. Specifically, we apply Jamrozik and Nocella's residualist conversion model to the problem of obesity in order to explore whether such an approach can provide greater insight into the processes that underpin lifestyle drift and inform our attempts to mitigate it.

Adaptive Policies for Reducing Inequalities in the Social Determinants of Health.

Inequalities in the social determinants of health (SDH), which drive avoidable health disparities between different individuals or groups, is a major concern for a number of international organisations, including the World Health Organization (WHO). Despite this, the pathways to changing inequalities in the SDH remain elusive. The methodologies and concepts within system science are now viewed as important domains of knowledge, ideas and skills for tackling issues of inequality, which are increasingly understood as emergent properties of complex systems. In this paper, we introduce and expand the concept of adaptive policies to reduce inequalities in the distribution of the SDH. The concept of adaptive policy for health equity was developed through reviewing the literature on learning and adaptive policies. Using a series of illustrative examples from education and poverty alleviation, which have their basis in real world policies, we demonstrate how an adaptive policy approach is more suited to the management of the emergent properties of inequalities in the SDH than traditional policy approaches. This is because they are better placed to handle future uncertainties. Our intention is that these examples are illustrative, rather than prescriptive, and serve to create a conversation regarding appropriate adaptive policies for progressing policy action on the SDH.

Systems science and systems thinking for public health: a systematic review of the field.

OBJECTIVES: This paper reports on findings from a systematic review designed to investigate the state of systems science research in public health. The objectives were to: (1) explore how systems methodologies are being applied within public health and (2) identify fruitful areas of activity. DESIGN: A systematic review was conducted from existing literature that draws on or uses systems science (in its various forms) and relates to key public health areas of action and concern, including tobacco, alcohol, obesity and the social determinants of health. DATA ANALYSIS: 117 articles were included in the review. An inductive qualitative content analysis was used for data extraction. The following were systematically extracted from the articles: approach, methodology, transparency, strengths and weaknesses. These were then organised according to theme (ie, commonalities between studies within each category), in order to provide an overview of the state of the field as a whole. The assessment of data quality was intrinsic to the goals of the review itself, and therefore, was carried out as part of the analysis. RESULTS: 4 categories of research were identified from the review, ranging from editorial and commentary pieces to complex system dynamic modelling. Our analysis of each of these categories of research highlighted areas of potential for systems science to strengthen public health efforts, while also revealing a number of limitations in the dynamic systems modelling being carried out in public health. CONCLUSIONS: There is a great deal of interest in how the application of systems concepts and approach might aid public health. Our analysis suggests that soft systems modelling techniques are likely to be the most useful addition to public health, and align well with current debate around knowledge transfer and policy. However, the full range of systems methodologies is yet to be engaged with by public health researchers.